Pippa's Journey with a Brain Tumour

Sometimes a journalist has the task of sifting through mountains of information and condensing it into a story. Sometimes that information is so technical it makes your brain ache. The story needs to make sense to the reader and to do this the journalist has to assume that her reader knows absolutely nothing about the topic. Finally, the story has to have a purpose to the reader – the who, what, when, where and why all need to connect.

This week a journalist at our local paper was given the task of reading through pages and pages of a global medical project. She was then required to understand a complicated web of philanthropic funding that involves a Trust, two Foundations, a hospital, a research institute, a Doctor and the Federal Government. Her task was to take all this information and make her focal point the link between Pippa and all of this. On top of that, she had to fit it into a specific space and word count. Often this can be where mistakes get made or the message gets lost simply because you have so much to explain and not enough words to do it.

When Pippa was diagnosed and treated the only options her oncologist had were to try and extend her life whilst maintaining as much quality as he could for her. I am forever grateful to him for giving us so much time with Pippa being relatively well and away from hospital and I will continue to help him with his research projects as much as I can. To try and remove this type of tumour is impossible; it blends itself like the tentacles of an octopus into the brainstem from the inside. The radiation therapy Pippa received were the same doses as an adult. The steroid doses, higher than an adult. The chemotherapy – one drug was an adult brain cancer drug and the other an adult bowel cancer drug. With paediatric brain cancer there are no drugs specifically for children. Her oncologist told me if there was a drug he could fly in for her he would. If there was a hospital he could fly her to he would. But there wasn’t either.

DIPG326(Pippa’s Trust) was set up after we donated the tissue to the Royal Children’s Hospital Tumour Tissue Bank at Murdoch Children’s Research Institute. It was the first brain tumour there to give a live cell line. This means it can be shared as tissue, but also that the live cell line can be grown and multiplied and shared. Then in turn each cell line grown from the original can be grown and shared again and again. Currently DIPG326 (the name of the tumour when we saw it in a petri dish) has been shared in Canada, the USA, Sydney, Perth and Melbourne.

The Bank is 100% philanthropically funded by CIKA (Cancer in Kids at RCH). DIPG326(Pippa’s Trust) sits as a small part of CIKA and holds money specifically to be used to assist research and collaboration into pediatric brain cancer via the RCH Tumour Tissue Bank. Money there has come from small and large community fundraising, donations, raffles etc from the community, Pippa’s friends, Pippa’s cousins, Schools, local businesses and the Robert Connor Dawes Foundation (RCDF).

RCDF have acknowledged that the contribution made by Pippa’s vast community through monetary donations, volunteering and will continue to transfer annually to DIPG326(Pippa’s Trust) in honour and memory of Pippa.

Connor’s Run this year is on Sunday 17th September and we have a team of 30 people running or walking for Pippa. There are possibly more that I don’t know about – I usually bump into someone I don’t expect to see. The Run is 4000 people leaving from Hampton and St Kilda walking or running along the beachfront to the Yarra River boat sheds. No less than 350 Volunteers are needed to join up and help make this day a great success again

Pippa’s oncologist is one of the lead investigators and co-chair of the AIM BRAIN PROJECT. He and his fellows will work closely with other leads some of whom are also connected to Pippa. RCDF initially funded AIM BRAIN with the federal government topping up the remainder. AIM BRAIN will genetically test and study the molecular make up of each tumour individually to allow for better outcomes and treatment.

After the federal government gave their funding the Tissue Bank were then required to be able to perform their part in the project – tissue samples for the project need to be stored and distributed. DIPG326(Pippa’s Trust) is directly providing the funds for this.

I am grateful for the support I received from a number of charitable organisatons. When your child dies you are asked numerous times whether or not you will be setting up a charity. My answer was always the same – no, it would be remiss of me to do so. Firstly, because I need to be able to provide and care for James and Patrick on my own and secondly because there are so many charities already dipping from the same pool. Instead I help and support where and when I can. From our own journey I know first hand what needs to happen, how things can be done differently and where there are gaps. AIM BRAIN is the first of many projects and initiatives I will be involved in.

When James, Patrick and I toured the Tumour Tissue Bank another of the lead investigators on AIM BRAIN said something to me and it is something I think about often, more days than I care to count. He said, “Virginia, DIPG is the most complex of all tumours. So little is known about it that unlocking answers to DIPG could provide answers and cures to many more cancers.” This is how my relationship with CIKA began, how my relationship with the Robert Connor Dawes Foundation evolved into an continual working relationship and the reason I will always support and work closely with Pippa’s oncologist.

Click on the links, Donate, Fundraise, Volunteer, share and send this blog even wider or simply for now, just pause for a moment and think about our children who had no chance because paediatric brain cancer research was not given priority earlier.